HB 1449

1	A bill to be entitled
2	An act relating to brain tumor research; creating s.
3	381.853, F.S.; providing legislative findings and intent;
4	requiring the Evelyn F. and William L. McKnight Brain
5	Institute of the University of Florida to develop and
6	maintain a brain tumor registry; providing that
7	individuals may choose not to be listed in the registry;
8	establishing the Florida Center for Brain Tumor Research
9	within the Evelyn F. and William L. McKnight Brain
10	Institute of the University of Florida; providing purpose
11	and goal of the center; providing for a competitive grant
12	process for awarding certain funds; requiring the center
13	to hold an annual brain tumor biomedical technology
14	summit; providing for clinical trials and collaboration
15	between certain entities; requiring the center to submit
16	an annual report to the Governor, Legislature, and
17	Secretary of Health; providing for funding; establishing a
18	scientific advisory council and providing for membership,
19	terms of office, meetings, and compensation; providing an
20	effective date.
21
22	Be It Enacted by the Legislature of the State of Florida:
23
24	Section 1.  Section 381.853, Florida Statutes, is created
25	to read:
26	381.853  Florida Center for Brain Tumor Research.--
27	(1)  The Legislature finds that each year an estimated
28	190,000 citizens of the United States are diagnosed with
29	cancerous and noncancerous brain tumors and that biomedical
30	research is the key to finding cures for these tumors. The
31	Legislature further finds that, although brain tumor research is
32	being conducted throughout the state, there is a lack of
33	coordinated efforts among researchers and health care providers.
34	Therefore, the Legislature finds that there is a significant
35	need for a coordinated effort to achieve the goal of curing
36	brain tumors. The Legislature further finds that the biomedical
37	technology sector meets the criteria of a high-impact sector,
38	pursuant to s. 288.108(6), having a high importance to the
39	state's economy with a significant potential for growth and
40	contribution to our universities and quality of life.
41	(2)  It is the intent of the Legislature to establish a
42	coordinated effort among the state's public and private
43	universities and hospitals and the biomedical industry to
44	discover brain tumor cures and develop brain tumor treatment
45	modalities. Moreover, it is the intent of the Legislature to
46	expand the state's economy by attracting biomedical researchers
47	and research companies to the state.
48	(3)  The Evelyn F. and William L. McKnight Brain Institute
49	of the University of Florida shall work with other institutions
50	and organizations to develop and maintain a brain tumor registry
51	that is an automated, electronic, and centralized database of
52	individuals with brain tumors. The individual, or the parent or
53	guardian of the individual if the individual is a minor, may
54	refuse to participate in the brain tumor registry by signing a
55	form obtained from the department or from the health care
56	practitioner or entity that provides brain tumor care or
57	treatment which indicates that the individual does not wish to
58	be included in the registry. The decision to not participate in
59	the registry must be noted in the registry.
60	(4)  The Florida Center for Brain Tumor Research is
61	established within the Evelyn F. and William L. McKnight Brain
62	Institute of the University of Florida.
63	(a)  The purpose of the center is to foster collaboration
64	with brain cancer research organizations and other institutions,
65	provide a central repository for brain tumor biopsies from
66	individuals throughout the state, improve and monitor brain
67	tumor biomedical research programs within the state, facilitate
68	funding opportunities, and foster improved technology transfer
69	of brain tumor research findings into clinical trials and
70	widespread public use.
71	(b)  The goal of the center is to find cures for brain
72	tumors.
73	(c)  Funds specifically appropriated by the Legislature for
74	peer-reviewed brain tumor research shall be awarded using a
75	competitive grant process developed by the center.
76	(d)  The center shall hold an annual brain tumor biomedical
77	technology summit in the state to which scientists conducting
78	basic peer-reviewed scientific research from the state's public
79	and private universities, teaching hospitals, and for-profit and
80	nonprofit institutions are invited to share biomedical research
81	findings in order to expedite the discovery of cures. Summit
82	attendees shall cover the costs of such attendance or obtain
83	sponsorship for such attendance.
84	(e)  The center shall encourage clinical trials in the
85	state on research that holds the promise of curing brain tumors.
86	The center shall facilitate the formation of partnerships
87	between researchers, physicians, clinicians, and hospitals for
88	the purpose of sharing new techniques and new research findings
89	and coordinating the voluntary donation of brain tumor biopsies.
90	(f)  The center shall submit an annual report to the
91	Governor, the President of the Senate, the Speaker of the House
92	of Representatives, and the Secretary of Health no later than
93	January 15 that contains recommendations for legislative changes
94	necessary to foster a positive climate for the pursuit of brain
95	tumor research and the development of treatment modalities in
96	the state.
97	(g)  The center shall be funded through private, state, and
98	federal sources.
99	(5)  There is established within the center a scientific
100	advisory council that includes biomedical researchers,
101	physicians, clinicians, and representatives from public and
102	private universities and hospitals. The council shall meet at
103	least annually.
104	(a)  The council shall consist of:
105	1.  Two members from the Florida Center for Brain Tumor
106	Research within the Evelyn F. and William L. McKnight Brain
107	Institute of the University of Florida appointed by the
108	Governor.
109	2.  Two members from the Scripps Research Institute, one of
110	whom must have expertise in basic brain tumor research,
111	appointed by the Speaker of the House of Representatives.
112	3.  Two members from other public and private universities
113	and institutions directly involved in brain tumor research
114	appointed by the President of the Senate.
115	4.  One member from the Mayo Clinic in Jacksonville who is
116	directly involved in the treatment of brain tumor patients or
117	who has expertise in basic brain tumor research appointed by the
118	Secretary of Health.
119	5.  Two members from the Cleveland Clinic in Florida who
120	are directly involved in basic brain tumor research appointed by
121	the Governor.
122	6.  One member from the H. Lee Moffitt Cancer Center and
123	Research Institute who is directly involved in the treatment of
124	brain tumor patients or who has expertise in basic brain tumor
125	research appointed by the Speaker of the House of
126	Representatives.
127	7.  One member from the M. D. Anderson Cancer Center
128	Orlando who is directly involved in the treatment of brain tumor
129	patients or who has expertise in basic brain tumor research
130	appointed by the President of the Senate.
131	(b)  Council members shall serve staggered 4-year terms.
132	(c)  Council members shall serve without compensation, and
133	each organization represented shall cover all expenses of its
134	representative.
135	Section 2.  This act shall take effect July 1, 2006.

CODING: Words stricken are deletions; words underlined are additions.